Tuesday, June 22, 2010

To sleep, Perchance to Dream

This week seems to be wrapped around dreams. From a sleep-shifting night terror to peeking inside my day to day dreams, I can't seem to shake the clingy cobwebs of dreams.
I've had night terrors all of my life. I define them this way, rather than as their much calmer cousins, nightmares, because of how the frightful creatures in my dreams follow me into wakefulness. The other night a gentle dream set in the neighborhood of my child life slowly transformed into a horror movie. I woke up, feeling pinned to the mattress, convinced that a dark figure was standing in the hallway. With prayer and breathing the oppressive terror faded. I reached for my sleeping husband's warm hand. His comforting aliveness anchored me as I watched the dark hours of morning pass.
Life is full of dreams. The biggies of how lives will be lived are sprinkled with the little dreams that in their sum total make up the story of a life. One of these, for me, is gardening. Women who love growing things runs through my life: my great grand mother and her roses, my maternal grandmother with her snowball bushes and pampas grass, and my own mom who has a gift for gardening and who has taught me most of what I know. I always planned to be one of those people with an ever changing, all season garden full of scents, and bees, and beauty. The first home we purchased had a flat lifeless yard and when we left a few years later, it was mostly unchanged. The rapid progression of my illness kept my garden dreams in check. Our new place had dying roses, hummocky green weedy lawn from foundation to fence, and a few weedy trash-filled beds. Over the past few years I've fought to improve the place. Spending money we can't really afford to hire out the heavy labor, a dear friend prunes my roses, and every time my mom stops by, she spends a few minutes clipping and pruning. The fact remains that due to MS I will never have the garden from my dreams. I won't spend long days hauling dirt and digging holes and joyfully grubbing around outside. Just lately I am starting to accept the reality of this.
Yesterday afternoon I sat on my porch with two friends. We are close to the same age, all have kids, and all have different challenges and losses. I heard in our conversation the yearning for similar dreams. The poignancy of raising children. The need for more time to simply be. The desire to create rich and rewarding lives. 
It is easy for me to long for what I imagine they have: careers, busy schedules, volunteering and even gardening. I'd guess that they too see things in my life that they wish they had. Although it is hard for me to image what that would be.
It is interesting to consider that I have accepted my night terrors and learned strategies to go through them and can't seem to do the same for my day to day dreams that will not come true. This summer I have placed a few pots of flowers on my porch and enjoy watering and fussing with them. These few flowers aren't a substitute for my fading dream garden, but I do come inside with dirt under my fingernails and for now, that will have to do.

Tuesday, June 8, 2010

A Little Light Through the Fog

For folks living in London in the Victorian era fog was part of every day. The fog is described as making the air feel oily and being a cloying choking sickly yellowish hue that could block out the sun at mid day. Amazingly, in modern times, fog is a rarity. The fog of Dickin's London was a toxic brew caused by smoke from burning coal. For these Londoners living with the human-caused toxic fog became so normalized that memory of life without it faded completely. Today, tourists are disappointed to find that the storied images of a foggy London are just that, stories. 
MS is the fog in my life. Last week, after ten or so days of a bad virus, MS decided to remind me that my symptoms could be much much worse. Steadily in inches over the past ten years, my symptoms have worsened. With secondary progressive MS, changes don't come all at once. Unless they do. Sometimes, as in my left wrist one April day six years ago, weakness descends like a curtain on closing night. From one day to the next I could no longer lift my hand. It hung uselessly off the stump of my wrist. Oddly, my fingers seemed as strong as ever. Much of my focus is on the steady loss of function in my arms; first left shoulder and scapula, later the left wrist, and lately my right wrist and thumb. If I could patch my two arms together in a Frankenstein fashion I would have one rather workable limb. Another aspect of my arm symptoms is chronic nerve pain that descends from mid bicep to finger tip. The muscles knot and spasm. Using my hands and arms makes the pain and spasming much worse. Some days it is too painful to sort socks or hold a book. 
I developed the false belief that my arms simply couldn't be much worse. Like the Victorian fog, I had learned to live with them. Last week, the virus triggered my MS and showed itself in searing pain that seemed to course through my arms like a living thing.
In the past, both my pain doctor and my neurologist acknowledged my arm problems with a resigned attitude that convinced me that nothing could be done. I was prescribed a standard nerve pain med that I faithfully took as well as a basic pain med that did little if anything for relief. I happened to see my new 'GP' doctor for an annual exam and in the course of our conversation I mentioned the chronic pain. He said that the level of pain I was in meant the medicines weren't working. He didn't discount my pain or shrug it off. Simple, straight forward acceptance and belief. The first ray of light from a member of the medical community in a long long time. His first step was to switch the nerve pain med (these type of meds aren't traditional pain medications-they work in the brain to alleviate what is triggering the nerves). Over the next few days it caused me to be drowsy enough to fall sound asleep at church. With the spike in my arm pain, increased weakness in my legs, and the mind numbing sleepiness, by Monday I had just about reached the end of my tolerance. I called the doctor back to ask how long the drowsiness would last and when to expect the nerve pain med to help, if it would at all. I mentioned that I was having an illness related exacerbation.
When the doctor's assistant called back, they offered me a stronger pain medicine. Never, in all the years I have struggled with truly terrible pain in my arms, has a doctor offered to help. I had so totally accepted, by my 'specialists' seemingly resigned acceptance of the pain, that there was nothing to be done. In a visit and a phone call my new doctor showed me that what was 'normal' as well as terrible, could and should be treated.
I wish I could say that the strongr pain med magically lifted the pain fog from my life. I can say that after two doses my level has dropped significantly. I feel like I can breath for the first time in days. I have enough reserve in my tank to write this. Maybe I will be able to read today. I am hopeful that the new nerve pain medicine will start to work (the doc said 7-10 days, which will be this Thursday or Monday).
I welcome this ray of sunshine as the sharp edges of pain are dulled and the hope that having a doctor believe in me provides. It isn't a cure or complete relief. However, belief in my experience and better medicine, give me something I haven't had in years: a little bit of hope that something can be done to make living with this type of MS a little bit better.